Pros/Cons Chart for PANS treatments.....what are cons of IVIG?

[eljomom]

I was thinking about what the pros and cons are of treatments for PANS (tired of calling it pandas....what a misleading name!!!), and realized that I really don't know the cons of IVIG/PEX, because I have not gotten that far yet, and have spent all my time just trying to understand this illness. But I am guessing there really are some possible cons of this sort of treatment, both in the short and long term. Can anyone explain???

 

So, I am about the most clueless chart-maker on earth---but wondered if one of the people who make charts like they make a PB&J would be willing to put one together for people in order to help with decisions about treatment? We could compile all the data people reply with and put it in chart form. I am happy to put it in list form, but just am not so good at putting a chart together, or posting it.

 

So far,

 

Antibiotics-----

 

Pros----works on the infection that might be causing the antibodies, possibly anti-inflammatory, possibly immune-modulating (we could even break this topic down to which abx are better for what)

Cons----resistance, lowers immune function (this I really don't know), guessing there are other cons

 

Steroids---

PROS----immune-modulating, anti-inflammatory (guessing again)

CONS--- if underlying infection, can allow it to become worse (?)

 

IVIG---

PROS---anti-inflammatory

CONS---not sure,

 

I am now in unchartered territory, so I won't even try to guess.....

Anyone who can put some facts and info here would be appreciated.

Wendy

[butterflymom]

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Edited February 3, 2016 by butterflymom

[tantrums]

Cons to steroids - for us anyway (my DS also had chronic croup as an infant/toddler and was on orapred ALOT), ruins the coating of the teeth discoloring the adult teeth. My DS also reacts very badly to steroids - they make his rages and inability to handle things much much worse. Dr. feels this is "just him" and is not an indicator of how he would react to IVIG since he has always responded this way to them.

[kimballot]

HI - I added mine in with italics.

 

Antibiotics-----

 

Pros----works on the infection that might be causing the antibodies, possibly anti-inflammatory, possibly immune-modulating (we could even break this topic down to which abx are better for what)

Cons----resistance, lowers immune function (this I really don't know), guessing there are other cons; [iYeast/ anarobic bacteria imbalance; stronger ABX & combo ABX (used more with severe lyme) can have severe systemic side effects on pancreas, gall bladder, etc.

 

Steroids---

PROS----immune-modulating, anti-inflammatory (guessing again)

CONS--- if underlying infection, can allow it to become worse (?); If underlying infection, the results will be temporary.

 

IVIG---

PROS---anti-inflammatory; adds antibodies that are not autoimmune in nature; MAY reset the autoimmune process; Can decrease frequency of illness for kids who are immune deficient thereby decreasing frequency of exacerbation.

CONS---Pooled blood product from hundreds of donors - considered to be "safe" but one never knows what unknown virus might be lurking in there; Expensive; Short term side effects such as headache, nausea; Increase in symptoms seen in some kids (turning back pages?) - generally reported to be temporary, but nonetheless debilitating.

 

Plasmapheresis

PROS-- removes antibodies to decrease autoimmune response; Many people report a more immediate response than IVIG; Does NOT introduce donor antibodies.

CONS-- requires overnight stay (I believe); Does not replace antibodies, so the effects seem to be shorter-lived for many children.; limited number of doctors offering this service

[laure]

Hi Eljomom,

I don't believe we have spoken before, but your posts make me so very sad. Your daughter sounds so ill. I feel I would have been in the same place with mine were it not for the wonderful advice from SFMom and others who very strongly urged we look further into lyme. I was a strenuous resister at first. Check out my posts, you can follow the progress of my dd10. She was full-blown PANDAS in July, and is 95% now since lyme protocol... We will still watch for PANDAS and keep the options for that treatment open though... I don't want to be pushy, but just want you to consider the idea - what if her treatment was that quick and easy?

Prayers with you all.

[Megs_Mom]

I guess I would just add a pro for these options, which each parent and doctor will need to consider as they look at each child. For us, the pro for each option we considered was the opportunity to heal a child that had lost nearly everything in the space of a week, and to prevent future severe exacerbations. If a child cannot eat, play, sleep, think, go to school - if a child is lost - and can be found again - then that is quite a pro. We are very conservative, and took each step very very carefully. But we had a huge pro in that traditional ERP therapy helped us but did not prevent severe re-exacerbations over and over. So we had more tolerance for some careful risk. Life is so worth living now. Maybe in some odd way, we were lucky to be severe - as I am not sure how I would have made decisions if the impairment was mild. I think every child deserves 100% - it just would have been harder for me to make the decisions.

 

I'd advise every parent to really evaluate the severity of the child & then take it one slow step at a time.